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when to start treatment
My sister's doctor just diagnosed her as having Hepatitis C, he told her to wait 3 months and he would see her again. Why would he make her wait instead of treating her right away?
A second opinion is oftimes valuable. First of all, the only time an infection will "clear naturally" is in the acute phase in the first few months after the first exposure to the virus. Unfortunately, this is also the time that timely treatment works the very best.
Of course, we don't have any idea when your sister was infected. It's certainly possible that she's had this infection for years. In any case, she needs to get BACK with her physician and find out exactly WHAT his game plan is, if any, and why he's having her wait three months. She should take notes as to what he's saying so that she can follow up the info he gives her. Its also valuable to make certain her physician is a hepatologist (liver specialist).
Of course, we don't have any idea when your sister was infected. It's certainly possible that she's had this infection for years. In any case, she needs to get BACK with her physician and find out exactly WHAT his game plan is, if any, and why he's having her wait three months. She should take notes as to what he's saying so that she can follow up the info he gives her. Its also valuable to make certain her physician is a hepatologist (liver specialist).
thank heavens for these forums...when I was first diagnosed, the doc told me that I would probably be needing a liver transplant within 3 years (this was back in 01) and that less then half of the people who need livers receive them. Needless to say, it was a long ride home that day. And at the time there was nothing wrong with me at all, and no damage at all, cept that I had this virus. That night, I found some hep c support boards, one that had live chat, and asked these patients if I could live beyond 3 years without a transplant, they told me my doc was full of beans telling me that without any proper testing. And he was. If I would of believed him and just took him at his word, God knows what I would of done. The wait to get a second opinion would of been agony.
Now, unfortunately, I am symptomatic......but I still have low liver damage and great labs all these years later.
One essential thing you can get from these forums is hearing from people who have experienced so much as it relates to this disease. There are many good docs out there, but there are docs who.....aren't so much.
Additionally, If it wasn't for these forums, I would of believed this head of a liver clinic from a big teaching hospital - who told me that people who are infected with hep c do not experience symptoms unless they are cirrhotic. I would of questioned my own sanity because of this blanket invalidation - once I did begin to experience symptoms.
Oddly enough, according to so many patient testimonials that I have read, there are people who are cirrhotic who don't experience symptoms....and there are people who have only low damage, who do experience symptoms.....this disease is all over the place in that regard.
I really think that some clinicians can be very narrow minded, and if they talk to enough patients who don't experience any symptoms from hep c (and it's just one of those mysteries as to why that is) then they automatically extrapolate that out to meaning that the rest of their hep c patients, who do experience symptoms, are just being hypochondriacs. Or, worse yet, malingerers who maybe are trying to get disability recommendations. (Sure, this could be the case for some, but certainly not for all.) There is no clinical marker, of sorts, that can accurately test out for, say, fatigue (probably the most cited of hep c symptoms). A doctor has to *believe* you are experiencing fatigue. Or not.
It just makes sense that if you have a low level chronic infection, that many people will experience symptoms, like you do when you have a flu virus that your body is trying to fight off. Why is this such a big mystery to so many docs? I've heard more than one patient come on here and tell us that their doc says people who have hep c don't have symptoms. My doc doesn't see why some docs can't fathom this phenomenon? I digress.
Sometimes, as patients, we all need a frame of reference if we don't have one, these boards can provide that. Sure, there are differences in opinion, or sometimes people speak before they think things through, or just give bad info period, etc etc...but I bet you these boards have even saved lives.
I have a friend Henley, who is co-infected with hep c and HIV. He's a very obsessive type, and he says that if he were to go on these boards he'd have every symptom, bad experience, etc that he would read on here, lol...I can respect that, and some of that does go on.
He's the type of patient that just figures he'll find a good doctor, and let that doctor do everything in terms of his care, without question. He doesn't want to know anything. If that works for him, fine. I'm just not that type of person. I want to at least know enough about the disease, and treatment protocols, etc to be able to even evaluate if I am going to a good doc or not. Based on what I've seen here and elsewhere, I'm pretty satisfied with the doc I have now, thank goodness.
Now, unfortunately, I am symptomatic......but I still have low liver damage and great labs all these years later.
One essential thing you can get from these forums is hearing from people who have experienced so much as it relates to this disease. There are many good docs out there, but there are docs who.....aren't so much.
Additionally, If it wasn't for these forums, I would of believed this head of a liver clinic from a big teaching hospital - who told me that people who are infected with hep c do not experience symptoms unless they are cirrhotic. I would of questioned my own sanity because of this blanket invalidation - once I did begin to experience symptoms.
Oddly enough, according to so many patient testimonials that I have read, there are people who are cirrhotic who don't experience symptoms....and there are people who have only low damage, who do experience symptoms.....this disease is all over the place in that regard.
I really think that some clinicians can be very narrow minded, and if they talk to enough patients who don't experience any symptoms from hep c (and it's just one of those mysteries as to why that is) then they automatically extrapolate that out to meaning that the rest of their hep c patients, who do experience symptoms, are just being hypochondriacs. Or, worse yet, malingerers who maybe are trying to get disability recommendations. (Sure, this could be the case for some, but certainly not for all.) There is no clinical marker, of sorts, that can accurately test out for, say, fatigue (probably the most cited of hep c symptoms). A doctor has to *believe* you are experiencing fatigue. Or not.
It just makes sense that if you have a low level chronic infection, that many people will experience symptoms, like you do when you have a flu virus that your body is trying to fight off. Why is this such a big mystery to so many docs? I've heard more than one patient come on here and tell us that their doc says people who have hep c don't have symptoms. My doc doesn't see why some docs can't fathom this phenomenon? I digress.
Sometimes, as patients, we all need a frame of reference if we don't have one, these boards can provide that. Sure, there are differences in opinion, or sometimes people speak before they think things through, or just give bad info period, etc etc...but I bet you these boards have even saved lives.
I have a friend Henley, who is co-infected with hep c and HIV. He's a very obsessive type, and he says that if he were to go on these boards he'd have every symptom, bad experience, etc that he would read on here, lol...I can respect that, and some of that does go on.
He's the type of patient that just figures he'll find a good doctor, and let that doctor do everything in terms of his care, without question. He doesn't want to know anything. If that works for him, fine. I'm just not that type of person. I want to at least know enough about the disease, and treatment protocols, etc to be able to even evaluate if I am going to a good doc or not. Based on what I've seen here and elsewhere, I'm pretty satisfied with the doc I have now, thank goodness.
Thank You all. My sister is a bit freaked. I told her about this site, it will be up to her if she wants to join. I will continue to educate myself no matter what she decides to do. I have heart disease,and I have small children, I am very proactive when it comes to my health. Denial is reserved for the people who only see the glass as half empty. I see it as almost full. Have a great weekend! Her family doctor ran the tests, she hasn't been to any specialists yet. She also had the antibodies for a long time, but now its the real deal. She also has Hep A, we don't know about B yet.
The specialists here in Portland at the Oregon Clinic don't put anyone on the treatment during the months of November and December. I *think* it was because they said that it's too hard for a patient to start during the holiday season. If that is the case, then you only have to wonder about the 3rd month. (I'm going thru the same thing.) Of course, this isn't maybe your city for treatment and maybe the doctors and nurses want a break for a couple of months.
I found out I had antibodies for hep. C in 1997 20 years after a blood transfusion. All my liver enzymes were normal. I didn't have chronic hepatitis C until 3 years later. First symptom exhaustion.
I didn't get treatment until 3 years later. I finished 51 weeks of treatment in Sept. 7 weeks ago.
Every situation is different. Save copies of all your labs, tests, unltrasounds, etc. for your own records. Sometimes people have to change doctors and it's much easier if you have all your own records and we like to have the information also. Is your sister seeing a gastro or a hepatologist?
I didn't get treatment until 3 years later. I finished 51 weeks of treatment in Sept. 7 weeks ago.
Every situation is different. Save copies of all your labs, tests, unltrasounds, etc. for your own records. Sometimes people have to change doctors and it's much easier if you have all your own records and we like to have the information also. Is your sister seeing a gastro or a hepatologist?
There is a natural cure, for, I think, about, 10 to 20% of people who contract Hep C. They just have the virus go naturally in the actue stage.. So when diagnosed in acute state, current protocol is to wait a little (just a few months) to see if it will go away first, before treating.
I wish I could find the article I read on attitudes to disease. It basically said that you either need information psycologically or you don't. It is very hard to provide information to someone who does not want it. This can cause a lot of tension in families when one partner who has a disease wants to know nothing about it, and trust the doctor, and the other partner goes out and trys to find everything they can. Just different personailty traits.
I wish I could find the article I read on attitudes to disease. It basically said that you either need information psycologically or you don't. It is very hard to provide information to someone who does not want it. This can cause a lot of tension in families when one partner who has a disease wants to know nothing about it, and trust the doctor, and the other partner goes out and trys to find everything they can. Just different personailty traits.
I studied hepatitis C for over 3 years and got so immersed in the subject that I had to give it a rest for awhile. It was too much information. I think it's better to go slowly. I was sure I could find an natural cure, but if they have one it is deeply hidden.
I had to wait for treatment as well, to see if cleared naturally. Your sister may be in acute phase, but if she is, she probably is having her blood tracked (Alt or similar).
As to whether or not she should come to this forum, it depends on the person. Not everyone wants to know everything about their disease. I have read that there is about an even split in the population between those who would rather trust doctor, and those who want to learn everything they can.
As to whether or not she should come to this forum, it depends on the person. Not everyone wants to know everything about their disease. I have read that there is about an even split in the population between those who would rather trust doctor, and those who want to learn everything they can.
Hey, Maybe you should tell your sister 'bout this forum. It is imparitive that ya'll become educated on this disease as there are many and vaired opinions about when it is wise to start treatment. jerry
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